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Brain Health Registry Newsletter - May 2018

May 2018

Dear Brain Health Registry Participants and Study Partners,

We’re delighted to announce that it is now four years since we launched the Brain Health Registry. A lot has happened since then, including the enrollment of over 62,000 people, including over 58,000 Brain Health Registry volunteers and over 4,300 study partners! We would not be where we are today without you, your enthusiastic support and your willingness to provide valuable information about your brain function. You are helping to spearhead advancements in neuroscience research by taking part in the innovative approaches used in the Brain Health Registry to collect and manage brain health data -- we immensely thank you for your involvement.

As we celebrate this special time, I would like to take the opportunity to share an update of what we have been doing at the Brain Health Registry, as well as some developments within the brain health field.

First Published Brain Health Registry Research Article

We are excited to announce that our paper entitled, “The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies” was recently published in the science journal Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. This is the first of several scientific publications about the Brain Health Registry, detailing its founding, development, overall goals, specific aims, and various activities. Please click here to read more.

In March I attended an international conference on Alzheimer’s and Parkinson’s disease that focused on advances in cognitive therapy. It was obvious to all attendees that the “big new thing” in the Alzheimer’s field is the development of blood tests that may be useful to test for, or even some day to diagnose, Alzheimer’s disease. The blood tests can be categorized into three types:

1. Measurements of amyloid protein in blood plasma

Amyloid-beta is thought to be the brain protein that accumulates and causes the development of Alzheimer’s disease. Newly developed methods can measure different kinds of this protein, and there appears to be great promise in some of these tests. In fact, a newly published research article showed the potential to accurately test blood for amyloid-beta protein in the brain, which previously could only be done through a brain scan or lumbar puncture procedure.

2. Measurement of other proteins, including neurofilament light (NfL)

Amounts of NfL are increased in Alzheimer’s disease, but NfL levels also increased in other brain disorders. Therefore, while it may be a sensitive test for detecting disease, NfL tests are not necessarily specific for detecting Alzheimer’s.

3. Genetic tests that predict risk for Alzheimer’s disease

These tests use the ApoE4 gene, a well-established risk factor, together with the many thousands of genetic markers from a Genome Wide Association Study (GWAS). Although these genetic tests cannot determine who has Alzheimer’s disease, they can indicate those with genes that increase the risk of developing Alzheimer’s with age.

The Brain Health Registry recently became involved in genetic testing through the GenePool Study. Our goal is to collect genetic material from BHR volunteers to learn more about how genes influence brain health. We launched the GenePool Study only 6 weeks ago and have been thrilled with the high response rate that you’ve already demonstrated. We’re ecstatic to see your interest and hope to continue to maintain such great enthusiasm to advance brain disease research.

Research on blood tests is still in the early stages. While there are no blood tests currently available for clinical use, substantial progress has been made. It is my guess that in the future, we will use a combination of the three aforementioned types of blood tests for research and ultimately for screening and diagnosing Alzheimer’s disease.

Of course, we are still eagerly anticipating a successful Alzheimer’s disease treatment trial. Although there have been some failures, a number of promising trials are underway. Within the next two to three years we will have much more information on this. However, none of these trials can be done without volunteers who to participate in studies. And that said, I cannot thank you enough for participating in the Brain Health Registry and putting forth an ongoing effort to help advance brain health research.

Professor of Radiology and Biomedical Imaging, Medicine, Psychiatry and Neurology, University of California, San Francisco
Principal Investigator, Brain Health Registry

Dr. Weiner is the founder and Principal Investigator of the Brain Health Registry. He is a physician and Alzheimer’s researcher with over 800 peer reviewed publications in scientific journals. Dr. Weiner is also the Principal Investigator of Alzheimer’s Disease Neuroimaging Initiative, the largest NIH funded observational study of Alzheimer’s disease.